Hi everyone,
I’m new to this forum: I’ve come searching for people that understand as I feel really alone in all this. When I was diagnosed back in June, no one prepared me for how I feel right now.
I’m a 47-yr old - otherwise totally fit and healthy woman. They found a right sided 'cystic lesion’ in neck during an MRI back in January - and labelled it as incidental, likely congenital. After an USS in May, I received a very sudden and unexpected diagnosis of Papillary Thyroid Carcinoma - confirmed by FNA in June.
On 4th July, I had a total thyroidectomy and lateral neck dissection where they removed 36 lymph nodes (20 were positive for cancer).
I’m now nearly 8 weeks post-surgery, and I feel so awful. I had a lot of post-TT compilations with my calcium levels dropping dangerously low, but after a week in hospital on a drip, they stabilised them. My calcium levels have now held despite me weaning off calcichews and alfacalcidol.
I’m currently taking 150mcg levothyroxine (increased from 125mcg a week ago). My TSH levels are 2.12 having pre-TT been much lower (av. 0.5). My T4 is 13.3 which is similar to what it’s always been. I have zero energy, I could sleep all day given half the chance. My body aches and my joints are stiff. I have awful constipation, and I feel like weight is piling on despite not really eating a great deal (in reality I e put 2-3kg on, but it feels far more).
Prior to all this, I was very active: running and gym 6/7 days a week and running ultra marathons (the most recent was 50miles in May). I now can barely walk a km without exhaustion.
I’ve been told I need another USS of my neck as my Tg results are a bit higher than they’d like (Tg is 3.4). They also have commented on a couple of very small nodules in my lungs. I’m due to have RAI sometime in September, but they won’t do it until they have the results of another neck USS to makes sure there’s nothing too big that may need removal.
I feel like I’m rattling on now…what I want to say is, I’m tired of being tired. I want to be active and feeling alive. I feel incredibly low with so little energy. I want to believe that there’s light at the end of the tunnel and that my thyroxine levels will kick in and I’ll feel more like myself again. Surgically, I’m ok. Yeah, the scar is tight, but it’s definitely improving although some days are a lot more uncomfortable than others.
Thank you for listening to me - it’s the first opportunity I’ve had to share this with people who might actually get it.
Jodi
